Severely autistic boy needs new heart: 'He typed that he was scared to die'
EUGENE, Ore. - Lief O'Neill's parents wait by his hospital bed in Palo Alto, Calif., as their son awaits a heart transplant.
"I really wouldn't want to be in his position, but he's such a champ about it," said Sage Rauenzahn, Lief's big brother.
While his brother awaits news on a new heart, Rauenzahn trims trees at the Great Mist lot in south Eugene. He helps run the family business while they're away.
"I want my brother to get a heart by within a year," he said.
Family friend Tiffany Mamalove said Lief has been denied his heart transplant twice because of his severe autism.
"The family was told that yeah there was fear about compliance issues and participating in recovery," she told KVAL News.
Although non-verbal, family and friends said Lief is quite articulate. He communicates through typing on this keyboard.
His most notable quote: "To type is to love."
His most recent quote?
"He typed that he was scared to die," said Patricia Parsons, Lief's grandmother.
When Stanford University Children's Hospital heard Lief's story, they flew him down. Lief is now the youngest person ever to receive a HeartMate.
Parsons said the device is Lief's bridge to a heart transplant.
"It's made for adults but because he's a big, strapping 9-year-old with a big chest, the device was able to fit," she said.
Lief's wait for a new heart is expected to be about 100 days.
His brother said this wouldn't be possible without the help of others.
"It is the most amazing gathering of a community that I have ever seen," he said.
There seems to be a false assumption that people with autism are lesser beings. Yet, as a society, we revere Einstein, Gates, Mozart, Grandin, and Warhol, to name a few. These are all people who have demonstrated atypicalities associated with autism. Perhaps it is the term severe that drives your position? Yes, many have speech deficits, and this seems to be the consistant factor in deeming somebody severe. Steven HAwking has severe speech deficits, too. And like Lief, he communicates effectively via keyboarding. Let's assume your stance is taken based upon perceived intellect. Thomas Edison was removed from elementary school after attending three weeks because it was believed he was cognitively impaired. Should he have been denied limited medical resources, had he need of them? My point here, is to emphasize that we never know what a person's future holds in terms of contributions or lack thereof. History has proven that your formula for deciding who will best contribute to society is erroneous at best, and biggoted and ignorant at the worst. A person's value is not determined by IQ or speech fluency, but rather by the ways in which the world is a better place for their having lived here. Lief has served as teacher to many, whose pre-concieved notions about autism are being shattered on a daily basis. He brings love and joy to those around him. He has forced people to re-examine their beliefs regarding the disabled. Based upon those few attributes alone, Lief has done a wonderous job of making the world a better place for all of us.
They're "denied medical care" because there aren't enough hearts to go around, and no way should a heart go to someone who is severely autistic over someone who is otherwise healthy.
@PleaseBeSmart  Many "healthy" people end up doing awful things in society. There is no way to make a "smart" judgement as to which person will end up murdering, abusing, robbing. How high does ones' IQ need to be, to warrant a heart transplant (according to you)? My daughter, who has Down's Syndrome, loves her job, and brings a lot of customers back because of her smiles, because of her work ethic, and her remarkable ability to remember their names. If you aren't a Nobel Prize winner, and needed a heart transplant, should others who are, be chosen for a heart transplant over you, because you have a lower IQ?   Maybe you would find more joy and learn a bit about the value of all people, if you were a bit "smarter."  Sometimes people are prejudiced because they lack experience, sometimes because they lack self-esteem and feel they have to put down others, in order to feel better about themselves...sometimes, they are just mean spirited. Maybe none of these apply to you.  Open your heart.    I pray you have people that love you just as Lief's family does. By the way," please be smart" and do a bit of research on famous, successful, talented people who have/had autism.Â
@PleaseBeSmart It's interesting that your "name" here is PleaseBeSmart, ironic isn't it??? I mean really? You are saying that those who have autisms lives are worth less than those who don't. I really hope and pray you are not a person who gets to help make actual decisions like this. If you REALLY knew about the situatioin you'd know that he is being MORE compliant with the medical tests and things going on him right now than any typically developing 9 year old CHILD... to say he doesn't deserve a new heart is just like you're trying to play god or something
 @PleaseBeSmart So some one who is nero typical, has seniority? So this amazing boy who teaches soo much to so many is less important? Your nero typical person, could be a drunk, theif, lier? You are a frigin moron. How do you sleep at night being that efin stupid. I am soo irritated with morons like you. Keep your stupid opinions to your self. One of these days your gona end up on the choping block and Gods not gonna save you, hes gonna have you look back on this and you will see the pain your ignorant comment has caused.
@PleaseBeSmart What is your reasoning behind this? What makes an autistic person's life less valuable than a neurotypical person's? Is he less able to love, less able to dream, less able to give joy to the people in his life? Do the people who know him and love him and work relentlessly for him not deserve this child in their lives over someone whose life experience has been different? Do you love someone who has special needs? Has your child ever been denied a chance at life because of who they are? This boy is doing a fine job of complying with the demands the doctors and machines are putting on him despite his unique challenges. He deserves a chance at life as much as anyone. If you were to meet him and talk with him you might change your position.
 @dusty I assure you I would not change my position, because I know there is an otherwise healthy individual out there who is in need of a heart and I would never deny it to them so that someone with severe autism may live. It's nothing personal and I have nothing against those with autism. Fact is, that hard call is made every single day. The question isn't "should this little boy have a shot at life?" It's "should this little boy have a shot at life OVER another who has also complied with demands of the doctors and is otherwise healthy?" If there were enough hearts to go around, of course he should have one. But there aren't, and as a society we've decided that we're going to give organs first to those with a good shot at living a full, normal life.Â
@PleaseBeSmart This boy has as good of shot at living a full, "normal" life as anyone. Unless by normal you mean looks, talks, and communicates like most people. He may not live up to that standard of what normal is, but I assure you the love he feels and provides to others is as real as anyone you describe as normal. To be able to experience and provide joy is what the doctors at Stanford say they use as their standard for who should be given this opportunity. I know several perfectly "normal" people who do not live up to that standard but I guess they deserve a chance at life more because they are more likely to live a "normal life"? I just dont get the reasoning.